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Hypothyroidism and not seeing specialist before 13 weeks...

(27 Posts)
DejaB00 Tue 12-Mar-13 14:22:38

I'm 12 weeks pg (first scan tomorrow) with my second DC and taking 100ug levothyroxine/day as I have been for the last couple of years (figures were way off the scale). I was diagnosed 8 months after DC1's birth.
Thing is, before I fell pg this time the endocrine consultant told me monitoring would be essential if I was to fall pg again, I'd have to be referred and seen ASAP. I've begged my gp, made phone calls to the endocrine unit, to no avail, they are seeing me for the first time next week (had blood taken yesterday for this purpose). Mw has referred me to an obstetrician for this, who I will see when I'm 16 weeks.
Could someone who's been in the same boat reassure me this is normal procedure and my pregnancy won't be affected by lack of early monitoring?
Thank you

rosiedays Tue 12-Mar-13 16:49:38

hi Deja I'm Hypothyroid too, have been for 15 years! when i found out i was PG i had not taken any meds for over 4 months (was on 150 a day and had run out.... moved house... got new job. not regestered at new GP.... def NOT TTC) GP sent me for bloods the next day and they were off the chart! (9 weeks PG) restarted me on 100 then up to 150 now on 200 and bloods nearly within normal limits. I saw consultant at 12 week scan, then 4 weeks later then had 2 telephone appointments. saw her again at 20 week scan and she discharged me as things were progressing well. i will have a monthly blood test. The general rule as far as i know is they increase Levo by 25 - 50 mgs a day.
I would try mentioning it to MW at scan tomorrow, but they cant do much with out blood results.
congrats and good luck

Welovegrapes Tue 12-Mar-13 16:59:28

Message withdrawn at poster's request.

Welovegrapes Tue 12-Mar-13 16:59:48

Message withdrawn at poster's request.

ooievaar Tue 12-Mar-13 19:33:41

That sounds pretty similar to the way my hypothyroidism was treated during pregnancy: I first saw the endocrinologist at 13 or 14 weeks, despite getting the referral from my GP at 4 weeks. In my area at least it seems you don't see a consultant until after the first trimester (perhaps because there is a slightly raised risk of miscarriage with hypothyroidism). If you're seeing the specialist next week though then I'm sure all will be well.

In my case, I got regular blood tests during the first trimester through my GP, and my TSH went up quite a lot before I saw the specialist. However I had to fight my GP to get my meds put up nearly pulled the crying pregnant woman trick because GP thought that fluctuation of TSH was 'normal' hmm even though my TSH was way above the level that would bring a diagnosis of underactive thyroid and I was called into the surgery twice about my results why bother testing if you're going to ignore the result? So I ended up calling the endocrinologist's office to ask them about my blood result/meds because I'd lost all confidence in my GP's judgement and couldn't bear to wait until I was actually seen.

The good news though is that the rest of my pregnancy went well, DD is now 8 months and she is perfect fine! so while I've been there and can well remember the worry about what might have happened before I saw the consultant, it doesn't seem to have had any effect on her.

DejaB00 Tue 12-Mar-13 19:46:07

Thank you so much for your replies, as I'm seeing them next week it's pretty much out of my hands now, I just feel angry at being ignored by everyone. It's reassuring to know it probably won't affect my pregnancy.
ooievaar I didn't know that there was a raised risk of mc!! I am sooo glad I didn't find this out before now, hopefully being 12 weeks I'm in much safer territory.

ooievaar Tue 12-Mar-13 19:53:05

Sorry, didn't mean to worry you! was just thinking cynically about why they don't bother to refer pregnant women before the second trimester - no point going to the expense if the pregnancy won't continue confused. AFAIK it's only a slightly raised risk and it may be in women who have undiagnosed hypothyroidism (I haven't seen the research), rather than those who are already being treated. At 12 weeks I'm sure you're in much safer territory by now anyway.

I also felt very angry at the lack of concern from my GP especially faced with ridiculous TSH levels and spent a lot of my pregnancy pretending I wasn't worried about any longer-lasting effects. If you are worried, do talk it over with the consultant - mine was very matter of fact (also about the raised risk of PND), and that did help.

DejaB00 Tue 12-Mar-13 21:15:20

Thanks, I definitely have MANY questions for the consultant as I've been completely left in the dark so I know nothing about potential problems. I suspect that's because my gp and mw don't know anything, which is pretty pants.

greengoose Wed 13-Mar-13 08:01:41

Hi DeJa, if you look up NICE guidelines, and the Endo society guidelines, then you should automatically have been told to increase dose by 25 on bfp, and then have had bloods done and Endo referal. Bloods should be done every 4/6 weeks throughout, although some HCA still stick to saying once a trimester is fine. Your doc is out of touch with current guidelines, and needs to update advice!
I wouldn't worry, as if you have got to 12 weeks, you are prob fine now, but this was bad of them, and you should make sure they are doing it by the book from now on!
There are some threads on here about this, I can't link just now, but if you search hypothyroid pregnant you should find them, lots of good advice.
I am currently 16 weeks pregnant, and have had to push for the correct care, but if you wave guidelines in front of docs there is not much argument really! All the best for the rest of your pregnancy!

DottyDot Wed 13-Mar-13 08:11:01

I take thyroxine and didn't have any endo referral, increased medication or extra blood tests when I was pregnant - didn't know this should have been the case to be honest. Ds2 is 8 and unless not being monitored makes your child VERY NOISY then there have been no adverse effects whatsoever!

Good to be kept an eye on though and hope all goes well.

rosiedays Wed 13-Mar-13 08:12:13

I've been very impressed by the care i have had regarding my thyroid. but i have stood my ground and demanded rather than wait to be offered.
oo is right OP re higher risk of MC in first tri. but it's only slight increase and your 12 weeks... please don't worry.
oo I'm so glad to hear you DD is ok. I worry, (but pretened i dont) When i asked my consultant to be honest about the possable effect to my baby she said ' Most of the time there is NO problems, they believe if left untreated there can be a very slight drop in IQ. ( So DD MIGHT not join MENSA) I tell myself this every the worry starts and it helps put the risk (worry) in to prespective. I also tell this to anyone who askes (so annoying)
OP please don't Google.... DR Google loves making Very Rare problems sound like we will all have them.
thanks

photographerlady Wed 13-Mar-13 09:02:03

I am 22 weeks and just upped my dose.

When I found out I was pregnant I told my GP, I did not have any bloods til my booking appointment and mentioned it when they were arranging bloods. I was 1.7 TSH before pregnant and then 1.9 at the booking appointment. At my 16 week midwife appointment I was 2.2 and then referred then to my endo who clocked me at 2.8. I just upped my dose from 100mcg to 125 with an appointment in 8 weeks to meet with the endo and check again.

Originally my endo appointment was booked at the end of april making me 29 weeks but then with a result over 2.5 TSH they changed it and I had an appointment the next day.

If you do not know your current levels than go to your GP to get tested.
If you do and its over 2 TSH than go to your GP to get tested.
If your levels are under 2 TSH then you should be fine til you booking appointment where they will then test your thyroid (make sure to mention it that you havent been tested in a while).

Hope any of this helps, my endo said some GPs raise your dose at the start and some do not and wait to see. My 21 weeks scan showed the baby is developed perfectly and I haven't had any side effects that I used to before I was diagnosed with hypo 4 years ago.

biscuit

HazleNutt Wed 13-Mar-13 09:18:24

what greengoose said, you should have had your dosage increased and should be monitored monthly - not only TSH, but also T4. Also, the recommended upper TSH limit is lower in pregnancy, which many GPs don't seem to know.

ooievaar Wed 13-Mar-13 10:43:20

I think my GP is also out of touch with the NICE guidelines - he didn't seem aware of upping by 25mcg immediately on getting a BFP (and I only heard about this a few months into my pregnancy), and when my TSH went up to 9 he insisted this was a 'normal fluctuation' (his usual reason for not upping my dose, though I've been arguing for years that it isn't high enough) and that as a non-specialist he didn't want to change my meds hmm.

Thing is, the guidelines are very simple: +25mcg on BFP and keep TSH below 2 throughout pregnancy. No reason why a GP shouldn't be aware / be able to follow those!

I got the impression from my consultant though that the TSH <2 was a general limit for everyone with diagnosed hypothyroidism, and that GPs on the whole undermedicate those with underactive thyroids for fear they might go overactive.

Fairydogmother Wed 13-Mar-13 10:45:46

i've just got my latest bloods back and i'm 5+6

they were 0.02 TSH and 27.3 T4

i've been referred to see the endo consultant but that was only last week so no appt as yet.

just going to google and see what those levels mean and if they are ok - midwife spoke to gp last week and he said they were ok. i was going a bit hyperthyroid for the last 6-8 weeks so my dose has actually reduced down from 175mg to 150mg

ooievaar Wed 13-Mar-13 10:49:05

Incidentally, over the course of my pregnancy I went from 125mcg (which I've always thought was too low) to 200mcg (which even the consultant decided that was too high as I was in the red zone of TSH <0.15 and technically overactive, though I had no symptoms). I lost the baby weight really quickly after the birth mind you which I suspect was due to the thyroxine. Not complaining!

8 months later I'm down to 150/175mcg alternating and am making sure the GP takes it very slowly indeed in reducing my dose. I suspect I'll end up at 150mcg, which is what I've been saying all along would be correct for me. <knows better than the doctor>

HazleNutt Wed 13-Mar-13 11:03:28

oo, my TSH for example is at the moment 0,16, but as T4 and T3 are both normal, mid-range, I'm not hyper and there's no need to change. That's why it's also recommended to check T4 during pregnancy.

Once you lived with your thyroid issues for a while, you often do know better than the doctor - I have to live with it, after all, and if I feel horrible with certain dosage then this should be changed, even though the levels could be "fine".

Fairydogmother Wed 13-Mar-13 12:00:26

struggling to find info about what the range for T4 should be - does anybody know?

HazleNutt Wed 13-Mar-13 12:37:37

it was probably free t4, so normal range about 10-23 pmol/L

HazleNutt Wed 13-Mar-13 12:40:06

Some sources state it could be a bit higher when pregnant:
www.obfocus.com/high-risk/Thyroidtests.htm

Fairydogmother Wed 13-Mar-13 13:09:01

Thanks hazle

still trying to work out what figures mean what! hopefully i'll get to see the consultant soon and in the meantime i'm booked back in with my gp

Fairydogmother Thu 14-Mar-13 10:42:02

just read the back of my vitamin packet and it says iodine 100% RDA

should i be taking in any iodine?!

my gp is no help lol

photographerlady Thu 14-Mar-13 11:08:54

I was always told to take vitamins hours after your thyroid meds. I take my levo first thing in the morning and my prenat vitamin before bed.

Fairydogmother Thu 14-Mar-13 12:13:35

yes i do that too but wasnt sure whether i was od-ing on the iodine!

my pee was a very bright colour this am so gp thinks its the vitamins!

HazleNutt Thu 14-Mar-13 14:05:50

It's recommended to take supplements later because some components affect absorption of the thyroxine. Considering that you are currently hyper, I am not so sure about the extra iodine either. Any chance you could find vitamins witout it until you can talk to the endo?

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